ISV - Department of Social and Welfare Studies

Tiny Jaarsma

Research Area

Tiny Jaarsma's research aims at enhancing the quality of nursing care and strengthening the health care delivery system for chronically ill cardiac patients. Her main contributions have been in promoting evidence-based nursing practice in the Netherlands and internationally, specifically in patients with heart failure.

Research areas mainly are related to improving the care and self-care of cardiac patients. Tiny's doctoral thesis which she defended in Maastricht (NL) in 1999 was titled: heart failure: nurses care’; effects of a supportive-educative intervention by a nurse on self-care, recourse utilization and quality of life of patients with heart failure.
From 2002-2010 Tiny was co-principle investigator of the multicenter COACH trial (Coordinating study evaluating Outcomes of Advising and Counselling in Heart Failure) in which she coordinated a team of 4 Phd Students, 50 health care professionals and more then 40 datacollectors.

Two main research lines are developed: (1) Improving and measuring self-care in cardiac patients and (2) Talking about prognosis with heart failure patients.

Recently she was involved in a policy initiative aimed at improving care for patients with acute heart failure.

Publications

Ongoing Projects

Technology and self care in cardiac patients

Adequate self-care behaviour is vital for patients with chronic cardiac disease. These behaviours often include life style changes (e.g exercise, diet) and symptom monitoring. Interventions to help patients to care for themselves need to be tailored to specific patients and conventional methods such as patient education and counselling might not be suitable for all patients. Some patients might benefit more from a tailored home based computerized approach.

Different new technologies that are developed for other purposes might be applicable to use in increasing self-care in chronic cardiac patients. Currently several telemonitoring devices are tested in cardiac patients. These telemonitoring devices are often aimed at symptom monitoring and sometimes at increasing patients knowledge. However, it remains questionable how these devices really improve self-care of patients on the short and long run. At the same time other technologies might be suitable to address aspects of self-care in specific subpopulations.

In a number of feasibility studies different technological solutions will be tested for suitability to improve self care in (cardiac) patients.

Currently two PhD students, Leonie Klompstra and Brynja Ingadottir, work in this research area. Leonie's first project was to testing the feasibility and applicability of a Nintendo Wii game computer to use in heart Failure patients to increase their daily physical activity. Brynja is currently exploring the use of serious gaming to educate surgery patients.

Wii-project

We currently recruit patients in a multicenter, international randomized controlled study with in total 600 heart failure patients. The overall purpose of the HF-Wii study is to determine the effectiveness of structured introduction and access to a Wii game computer in patients with heart failure to improve their exercise capacity, their daily physical activity, health care use and quality of life. Patients will be randomized into attention control (control) or structured access to a Wii game computer (Wii). Although for reasons of simplicity we have chosen for a specific application (Nintendo Wii) in this study, the results can be translated to similar applications. This study is currently collecting data in Norrköping, Linköping, Jönköping and Huddinge and is planned to start data collection in the Netherlands, Italy and Israel in 2014. (PhD student: Leonie Klompstra, co applicants Anna Strömberg, LiU and Jan Mårtensson, JH, Jönköping). Please find an update on the project and publications on http://www.hf-wii.com/

Other projects

Development of a computer game to learn about post-operative self-care (doctoral student B Ingadottir): This project was supported by a project in Liu's Sommarmatchen 2014

Evaluation a patient website (hearfailurematters.org) in which I was one of the co-developers, and is now evaluated by a team from LiU collaborating with the University of Utrecht (the Netherlands).

Describing use of Telemonitoring services and tools for Heart Failure patients in Sweden and Japan. This is a project that is lead by dr. N.Kato, post-doc in the research group) (Naoko Kato)

Talking about prognosis

This rather new research line includes two main projects aim to improve the communication about the trajectory of heart failure, especially about end of life or palliative care.

A core project in this line is called: TALK-HF (Developing and evaluating a Training program Aimed at reducing the Lack of Knowledge and communication concerning palliative care issues in Heart Failure patients. (PhD student Lisa Hjelmfors, funded by HjärtLung Funden and Konung Gustaf V:s och Drottning Victorias Stiftelse) and Fondkistan http://www.fondkistan.se/index.php?id=1650.

The overall purpose of the study is to improve the quality of care for heart failure (HF) patients, focusing on communication issues between health care provider and patients in order to improve their quality of life and also prevent unnecessary suffering and resource utilization. (collaborators: Prof Strömberg, Doc. Friedrichsen and Prof Mårtensson). Current data are collected in 136 HF nurses and of 611 patients and are analysed now. Future studies will include testing an intervention to improve communatio. This study is replicated in the Netherlands and data was also collected in the US.

Further activities related to this research line include collaboration with researchers in the University of Umea regarding The Heart failure and Palliative care Programme (HOPE).

Learning to life with the consequences of chronic (cardiac) disease

Peter Johansson started as 0.2 FTE postdoc to study the consequences of heart failure and further development of interventions for patients with chronic disease (HF and COPD). Furthermore together professors Anna Strömberg (LiU and Barbara Riegel (University of Pennsylvania) we developed the middle range theory: ‘the middle range theory of self-care in chronic illness’ .

Together with Swedish and American researchers the European Heart Failure Self-care Behaviour scale was developed, which is currently available in 15 languages and used in clinical research across the world to evaluate the effect of nursing interventions on heart failure patient outcomes. In addition, the instrument is used and tested in nursing practise to improve the quality of the patient education by nurses.(link: http://www.ncbi.nlm.nih.gov/pubmed/19147463)The scale is available in the following languages: Castellano, Catalan, Chinese, Danish, Dutch, English, Finnish, German, Hebrew, Italian, Japanese, Korean, Lituanian, Portuguese, Spanish, Swedish and Turkish.

Current and future activities

An international study studying self-care in different cultures is planned

Further validation of the existing language version and cultural specificity is planned for several versions

A new scale measuring self-care in LVAD patients is developed. Collaborators on that specific projects are Naoko Kato, Anna Strömberg and Tuvia Ben Gal

Optimize heart failure care at home

Involvement in three projects to improve heart failure at home.

COACH2: The COACH2 (study, which is performed by a research team in Groningen www.hartfalen-coach.nl and Tiny is involved in the steeringcommittee. This is a study evaluates whether long-term follow-up in primary care, under the condition of initial optimization of pharmacological and non-pharmacological treatment at the specialized HF clinic, is equally effective as long term follow up at the specialized HF clinic in terms of guideline adherence and patient compliance in patients with HF.

Implementation

Further develop and implement the Curriculum for a European Training program for HF nurses

Collaboration

A regional network CESAR is a group of more than 20 regional researchers who work toward Collaboration and Exchange in Swedish cardiovascular caring Academic Research. Rsracher in the area of cardiac care from Linköping, Jönjöping, Kalmar and Norrköping are included

International

For the MOVE-IT project that was submitted to EU we have built a strong consortium with collaborators from different countries. For this project we also included several SME’s , such as Sics East Swedish ICT (for effective industrial development and integration of the ICT applications in the daily life of elderly person), Minovi, (who has developed an on-body monitoring system), Seven Things AB (a company who has experience on personalized ICT development and Sensible (an Israeli company with expertise in telemonitoring) .

Particularly related to this program we have established collaboration from several continents. Data on the Wii trial will also be collected by the research team of dr. Tuvia Ben Gal, director of the HF Unit in Rabin Medical Centre (Israel) and Dr. Ercole Vellone, member of the Department of Public Health, Faculty of Medicine, University of Tor Vergata.

Further active collaboration exists with prof. Dr. Simon Stewart, head of Preventative Health & Group Leader of Population Health. From the University of Pennsylvania (USA) we work with the multidisciplinary team of professor Barbara Riegel.